Saturday (16 April) is Conversations that Count Day – a national initiative led by a co-operative of hundreds of people across New Zealand’s health system that is encouraging us to have a ‘Conversation that Counts’. That is, talk to those we care about and with those who will care for us as the end approaches about what we would want for ourselves.
Blogging with me today is Joe Hancock a senior medical officer who works in the Renal Department. Joe has an interest in Advance Care Planning (ACP) and end of life. This is his view on why everybody should know the dying wishes of their loved ones.
Starting a conversation about death and dying, isn’t easy and I remember feeling like an unwelcome intruder as I spoke to a gentle and polite Samoan man about ACP.
At the time, Mr AB (not his real name) lived locally in supported accommodation. It was summer and, although Mr AB had slight memory loss, he enjoyed getting out and about each day. He often took the bus and that week had taken the ferry to Waiheke – all courtesy of the Gold Card. Unfortunately, he did not take his medical care very seriously and over the years his mild diabetes and blood pressure had taken its toll. He now had advanced kidney impairment and while dialysis treatment was offered, Mr AB had turned it down.
So how do you start a conversation about illness trajectory, death and dying with a man you have just met? A man who has neither insight nor interest in things medical and no awareness of ACP. Is such a conversation reasonable or fair? Would it be kind?
Mr AB came to NZ from Samoa some fifty years ago. He was a young man looking for opportunity. He met his wife here among the Samoan community, found regular work and raised two girls. When their daughters moved to Sydney with their husbands, taking the grandchildren with them, Mr AB and his wife followed them over. However, he could not settle. It was too hot, too busy and too unfamiliar. He missed the things and the people he knew in NZ. He did not want to be separated from his family but he returned to South Auckland. He still saw his family regularly as they frequently came over to Auckland and he also visited them. We did not discuss illness trajectory or end of life at that first visit. We did not write an ACP.
Not everyone wants to discuss death and dying and we must always be respectful of that. However, research has shown that most people with advanced life-threatening illness do wish to have a conversation about end of life. Many want the opportunity to actively manage this important period of life. To put things in order and to perhaps say their goodbyes. Unless patients raise the topic themselves we can only identify their wish by sensitively enquiring. I believe we have a responsibility as health care providers to make that enquiry and to create that opportunity.
Furthermore, we cannot expect our patients to tell us when such a conversation is required. The patient is experiencing the journey of their illness for the first time. It is a unique experience for them. Mr AB did not feel unwell and did not realise he was close to the end of his life. Other patients may indeed be unwell. They may be suffering severe pain and be on strong pain relief. They may be in and out of the hospital or frequently attending clinics. They are likely to have a poor appetite, to be sleep deprived, to be anxious about their own situation and to be worried about how their families are coping. They have many things competing for their attention and there is often much confusion. It can be a challenging and stressful time. As health care providers we have the advantage of experience and have seen similar situations before. This creates a responsibility for us to recognise where the patient is on their particular journey, give the patient the opportunity to share in the knowledge of that recognition, allowing them insight and awareness of their situation and help them address their end of life issues if they so choose.
At the next visit, Mr AB’s blood test was showing kidney function at just 4%. He was not feeling quite right. He was becoming uraemic. Life expectancy was a matter of weeks. It would have been easy to have told him his kidney function was a little worse and to have empathetically managed his symptoms. He was not asking for anything more. When he becomes more unwell we could expect him to be admitted to hospital or perhaps go to hospice. Why would he need an ACP? We cannot change the outcome. Why do we need to confront him with this now? Are we being kind?
I talked with him about ACP. About documenting his wishes around end of life care and documenting his wishes for future medical care. I suggested we do this now in case he could not speak for himself in the future. We wrote an ACP together. Afterwards, he gave me permission to call his family in Sydney. They were shocked to hear he had so little time left and were startled to hear that he wished to go to Samoa. He wanted to pass away at home in Samoa and wanted to be buried there. It took two more telephone conversations for the daughters to come to terms with the situation.
When I rang his rest home the next week to check on Mr AB I was told that the family had suddenly arrived from Sydney and had taken him to the airport. He enjoyed two weeks of reasonable health in Samoa before becoming gradually weaker. He passed away in the place of his birth one month after his return home. He had taken the opportunity to put his affairs in order and to say his goodbyes. I believe the ACP process had enabled him to plan for a good death.
The New Zealand ACP document allows statements to be made to express the general wishes of the individual. It also poses some very specific questions. In particular, it asks that the preferred place of death be identified. I am grateful for the framework provided by the ACP document. Although the ACP process should always be tailored to individual circumstances, I believe the discipline it offers encourages us to be brave in difficult situations. Situations like this which we might otherwise leave unexplored.
It is kind to start conversations about death and dying. I believe we need Advance Care Plans.
Dr Joe Hancock
Joe holds a weekly Renal Supportive Care/Advance Care Planning Clinic.
- To care for those patients who have advanced kidney failure but who are not going to have dialysis treatment
- To develop Advance Care Plans for kidney patients.
If you would like further information Joe can be contacted via email: email@example.com
To find out more about Advance Care Planning visit www.advancecareplanning.org.nz.
You can now follow the CEO blog on Twitter.